Interconnections Worldwide

Working internationally to share information, help build knowledge and support teamwork around babies, children and young people who are disabled, marginalised or vulnerable

The home of Team Around the Child (TAC) and the Multiagency Keyworker

planes5elo

Print

The very special children of 2002

try_to_helpWas your disabled child born in 2002? Do you live in England? Will you tell us your story? This could help the prime minister see what 'ordinary' families go through.

This is a request for help from families. Will you please pass it to families you know? It is written by Peter Limbrick of Interconnections. 

It is general, and extremely sad, knowledge that our prime minister had a disabled son, Ivan, who was born in April 2002 and died at the age of six years in February 2009. David and Samantha Cameron have two daughters and a son all born after Ivan. 

Obviously, I do not know the family but I know many other families with disabled sons and daughters, some of whom have died, and my heart goes out to all of them. I am sure the unimaginable pain of losing an infant in this way fades only very gradually – if at all. 

The public knowledge about Ivan tells me that he was much loved, that he had a rare condition with epilepsy and cerebral palsy, that he could interact with his family, that he had a tough life with much pain and that he required 24-hour care. 

I have heard the prime minister claim that, because of Ivan, he knows the NHS well and respects it greatly.

Without wishing to detract from his family's experience, I am going to dare to suggest that a family with such a high public profile and tens of millions in the bank is likely to be cushioned from the real NHS experience – and probably from the real state education and social services experience too. 

Can I ask you two questions? 

  • Was your son or daughter born in England in the same year as Ivan (2002)?
  • Would you like to put your family's story on record with us?

When I have a collection of stories about 'the special children of 2002' I will do all I can to persuade David and Samantha Cameron to read them. I will not use anything abusive or spiteful. 

My main reason for doing this is so that the prime minister will be better informed about 'ordinary' families with children like Ivan next time he has cabinet discussions about welfare, the NHS, education or social care.

It might also happen that David and Samantha Cameron get an increased sense of a community around them of people with shared experiences. 

Here is more information for you if you want to send your story 

  1. Stories ought to be not much more that 1,000 or 1,500 words and can be much shorter if you wish. Please do not think your story has to be posh. The best words come from the heart. 
  2. Please send a photo if you like. I will seek your permission before using the photo in any way. 
  3. I will not give your contact details to anyone without asking for your consent. You can be anonymous if you wish by using made-up names. 
  4. If you can, please send your information to me electronically. Let me know if you need help in doing it this way. 
  5. When I have a collection of family stories, I will ask you if you want to share your contact details and your story with the other families who have sent their story to me. 
  6. I promise faithfully to use all my polite persuasion, imagination and inoffensive stubbornness to get the prime minister and his wife to read your stories. 
  7. What will happen after that, I am not sure. I wonder if the Camerons would like to meet up with some of the families? Please send me your ideas about this. 
  8. I will let all the families who write know what is happening to their story.

From Peter Limbrick, Interconnections

E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

Tel/fax: 01497 831550

share your information  Cartoon © Martina Jirankova-Limbrick 2011